I've been experiencing symptoms for a year and am very worried it might be als

[DanPS]

Hi all,
Just wanted to get your thoughts on some symptoms I've been having for a long time now that have been driving me a bit crazy. I'm a 62 year old hiv positive male, and for the past year I've had a limp because i can't lift my left heel, and the backs of both legs (more on the left tho) are always stiff. I've had no pain, numbness or tingling but i can't walk far without my legs getting very fatigued and feeling like they might give out on me. I had an mri which showed a compression in a part of my spine that would've explained the weakness, and underwent surgery to treat it last November.

Nothing has improved, in fact it seems to be spreading. Beginning in January I noticed twitching all over my body, sometimes it was worse than other times (up to one per second), but always present. I had an emg/nerve study done which was abnormal, and it showed both sensory and motor nerve involvement. Most recently, the weakness has spread to the front part of my left foot; I can't lift it if there is any resistance. Also, the twitching has gotten more concentrated in my left hand. Now I can't bring my pinky finger against my ring finger, and my ability to firmly grasp heavy items between my thumb and index finger is weakening (although not too bad yet).
This has been a really long process and I've worried all along that it could be als rather than just a pinched nerve/nerves. I will have a follow up with my neurologist to discuss results in about two weeks.

I should mention that prior to all of this starting, i had an infection that I couldn't get rid of and was on quite a number of antibiotics for a year and a half until i had a turp procedure/kidney stone blasted. I'm wondering if anyone has experienced similar symptoms following a prolonged illness with antibiotic treatments?

The emg study mentioned neuropathy as a possibility. I've had neuropathy before, and this doesn't feel the same although i'm sure the symptoms vary a lot depending on the type of neuropathy. I'm wondering, would a pinched nerve cause twitching all over or would it just be localized (without any pain)?

I get some comfort from the fact that I have hyporeflexia below the knees and some sensory nerve involvement, which i understand are not typical symptoms of als...but then i see that these are present in some cases.
Thank you very much for reading this and for any insights you may have, and best of luck to all of you!

 

[KimT]

That's a hard one but it could be more than one thing causing your symptoms. How long will you have to wait for a followup with your neuro. You can also get a second opinion. ALS doesn't show sensory involvement but you certainly need to figure out what's going on.

The twitches can be post infection, stress or some other benign issue. Keep following up with your doctor until you uncover what's going on.

 

[lgelb]

If you could post your deidentified EMG, we could be more helpful. As you say, "neuropathy" is a very general term. The results should be able to clearly differentiate a pinched nerve vs. a more general process.

HIV, antivirals, and antibiotics can all affect the nervous system, both acutely and chronically.

 

[DanPS]

Thank you for your responses, I found them to be comforting. I was able to move up my appointment to this week so i'll have more information, and hopefully a diagnosis of something other than ALS.